News

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access to lifesaving treatments, the nation’s highest-ranking health official said. “We have to think about how our financing system can protect those with serious and rare illnesses.

Ehlers-Danlos Society Receives Anonymous $1M Gift for Research

The Ehlers-Danlos Society has received an anonymous gift of $1 million to advance research in Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related medical conditions. The generous gift has enabled the Ehlers-Danlos Society, in collaboration with The International Consortium on EDS and HSD,…

Routine Heart Tests Not Needed for Hypermobile EDS Patients Unless Cardiac Problems in Family, Study Suggests

Routine heart tests and echocardiography — a non-invasive test that uses sound waves to create moving pictures of the heart — may not be necessary for patients with hypermobile Ehlers-Danlos syndrome (hEDS) who have no family history of heart problems, a small study reports. The study, “Utilization of echocardiography in Ehlers‐Danlos syndrome,”…

Connecticut Moves Closer to Approving Medical Marijuana for EDS

A panel of physicians has voted in favor of adding Ehlers-Danlos syndrome (EDS) to the list of conditions that are eligible for treatment with medical marijuana in Connecticut. According to an Associated Press story, the vote took place Sept. 27 and the recommendation was officially accepted by Michelle Seagull, commissioner…